Prophylactic total pancreatectomy in individuals at high risk of pancreatic ductal adenocarcinoma (PROPAN): systematic review and shared decision-making programme using decision tables

United European Gastroenterol J. 2020 Oct;8(8):865-877. doi: 10.1177/2050640620945534. Epub 2020 Jul 23.


Background: Individuals with a very high lifetime risk of developing pancreatic ductal adenocarcinoma; for example, hereditary pancreatitis and main-duct or mixed-type intraductal papillary mucinous neoplasm, may wish to discuss prophylactic total pancreatectomy but strategies to do so are lacking.

Objective: To develop a shared decision-making programme for prophylactic total pancreatectomy using decision tables.

Methods: Focus group meetings with patients were used to identify relevant questions. Systematic reviews were performed to answer these questions.

Results: The first tables included hereditary pancreatitis and main-duct or mixed-type intraductal papillary mucinous neoplasm. No studies focused on prophylactic total pancreatectomy in these groups. In 52 studies (3570 patients), major morbidity after total pancreatectomy was 25% and 30-day mortality was 6%. After minimally invasive total pancreatectomy (seven studies, 35 patients) this was, respectively, 13% and 0%. Exocrine insufficiency-related symptoms occurred in 33%. Quality of life after total pancreatectomy was slightly lower compared with the general population.

Conclusion: The decision tables can be helpful for discussing prophylactic total pancreatectomy with individuals at high risk of pancreatic ductal adenocarcinoma.

Keywords: Pancreatic ductal adenocarcinoma; cancer risk; diabetes mellitus; hereditary pancreatitis; intraductal papillary mucinous neoplasm; mutation; prophylactic total pancreatectomy.

Publication types

  • Research Support, Non-U.S. Gov't
  • Systematic Review

MeSH terms

  • Carcinoma, Pancreatic Ductal / epidemiology
  • Carcinoma, Pancreatic Ductal / prevention & control*
  • Decision Making, Shared*
  • Decision Support Techniques*
  • Disease Progression
  • Exocrine Pancreatic Insufficiency / epidemiology
  • Exocrine Pancreatic Insufficiency / etiology
  • Humans
  • Pancreatectomy / adverse effects*
  • Pancreatectomy / methods
  • Pancreatic Ducts / pathology
  • Pancreatic Neoplasms / epidemiology
  • Pancreatic Neoplasms / pathology
  • Pancreatic Neoplasms / surgery
  • Pancreatitis, Chronic / epidemiology
  • Pancreatitis, Chronic / pathology
  • Pancreatitis, Chronic / surgery
  • Postoperative Complications / epidemiology
  • Postoperative Complications / etiology
  • Prophylactic Surgical Procedures / adverse effects*
  • Prophylactic Surgical Procedures / methods
  • Quality of Life
  • Risk Assessment / methods
  • Treatment Outcome

Supplementary concepts

  • Hereditary pancreatitis